Glaucoma Disability and Assessment
Chat Highlights
November 7, 2007

On Wednesday, November 7, 2007, Dr. George Spaeth, a glaucoma specialist at Wills, and the glaucoma chat group discussed "Glaucoma Disability and Assessment".

Moderator:  The topic tonight is “Glaucoma Disability and Assessment”.  We are honored tonight to have with us Dr. George Spaeth, Co-Director of the Glaucoma Service at Wills Eye Institute.  Welcome back, Dr. Spaeth.

Dr. George Spaeth:  Thank you.  I will start with a question to all of you.  What is the ultimate purpose of treating a patient with glaucoma?

P:  To save his or her sight.

P:  Sight preservation.

P:  To save sight.

P:  To preserve and protect vision.

P:  To slow progression.

P:  To lower IOP (intraocular pressure) to acceptable levels to reduce nerve loss and, ultimately, vision loss.

P:  To preserve the quality of the patient's life.

Dr. George Spaeth:  That's it!

P:  I learned that from you.

P:  But without sight, the quality of life is greatly reduced.

Dr. George Spaeth:  All the other things are ways to try to help preserve the quality of life.  However, if a medication saves sight, but gives you cancer, it would not be a good drug.

P:  What does "quality of life" mean to you, Dr. Spaeth?

Dr. George Spaeth:  What it means to me doesn't matter.  What it means to each of you does matter.

P:  So it's a matter of what the patient and the patient's doctor want to achieve?

Dr. George Spaeth:  Yes.

P:  But the glaucoma specialist would have to change the treatment plan every time a patient's priorities and lifestyle changed.

P:  To me, "quality of life" means the ability to live my life to the fullest by being able to see.

P:  To me, that means being able to see well enough to play golf and make a living.

P:  My husband, who is blind from glaucoma and developed retrograde total amnesia (RTA) after a stroke, feels that being blind is not as bad as his memory loss.

Dr. George Spaeth:  Many doctors assume they know what their patients want, but many studies have shown otherwise.  (That's one of the reasons I was glad for this topic.)  So, what do we do about that?  The answer is that patients should not assume their doctors know what their patients want.  Patients should tell their doctors what they want.

P:  I am one of those who cannot imagine life without sight. It's a terrifying concept to me.

Dr. George Spaeth:  It is terrifying for most people.  I, for one, would not want to be under the care of a doctor who did not want to do his or her best to save my sight.

P:  I would think that a doctor, especially an eye doctor, would assume that all patients want to keep their eyesight.

P:  What I want is to be able to see as well as possible for as long as possible. Is that not what we all hope for?

Dr. George Spaeth:  As with everything, there is a cost: time, inconvenience, risks of treatment, etc.

P:  I don't understand.

Dr. George Spaeth:  Let me explain, because you hit on something critically important.  It is essential to remember that glaucoma is a condition that usually lasts the lifetime of the person.  Nobody starts with any damage from glaucoma. It is all acquired.

The rate at which glaucoma progresses varies, from blind in an hour to no effect on sight after 30 years.  So, to determine what risks of treatment are justified, first you have to know if the disease is going to cause any disability.  To do that, you have to know how long the person is going to live and how rapidly the disease is getting worse.  If your doctor doesn't have a good idea of how long you are going to live, he or she can't plan sensible treatment.

P:  How would an eye doctor know how long a patient is going to live!

Dr. George Spaeth:  We all know that a person whose parents both lived to be 100-years old is far more likely to have a long life than someone whose parents both died when in their fifties.  lt is not hard to get a good idea about life expectancy.  The Journal of the American Medical Association (JAMA) published an article by Dr. Sei J. Lee showing that by looking at body weight, smoking habits, presence of hypertension or diabetes, and a few other things, he could predict with great accuracy how long a person would live.

Consider a person with a life expectancy of 30 years whose glaucoma is getting worse slowly, and who already has lost some function.  Such a person needs vigorous treatment, even though his or her disease seems to be getting worse slowly.

P:  What do you mean by "vigorous" treatment?

Dr. George Spaeth:  By "vigorous" I mean whatever prevents the optic nerve and visual field from getting any worse.  For somebody who gets worse with an IOP of 30 mm Hg, that may mean one eyedrop lowering IOP to 20 mm Hg.

For somebody who is getting worse with an IOP of 15 mm Hg, it may mean lowering IOP to 8 mm Hg, which often requires surgery.  The point is, treatment has to be individualized to the person's needs.

P:  In my case, when I was diagnosed at age 44, I already had advanced normal-tension glaucoma.  I had my first trabeculectomy at age 48.  Now I'm 50 years old, and need a second trabeculectomy soon.

Dr. George Spaeth:  You are right.  You have no room to get worse.  So you need meticulous monitoring and treatments that have the best chance of working.

P:  During the past ten years, I have had many surgeries for aqueous misdirection glaucoma, but still have no optic nerve damage.  I know at least two others, however, who have lost their vision and are now blind.

Dr. George Spaeth:  I saw three patients today whom I first saw over 30 years ago.  All of them had advanced damage then.  They all had surgery and none of the three has progressed.

P:  What surgery did your patients have that lasted almost 30 years?  And do they use eyedrops?

Dr. George Spaeth:  All of them had trabeculectomies.  No one is using eyedrops.

P:  I'm legally blind, and had to give up my nursing career, driving, and some hobbies.

P:  I went back to college and got a mental health counseling license to go with my nursing degree.  You can work in the mental health counseling area without vision.

P:  When you have blind family members close to you, you get used to the idea, but it is still scary.

P:  My husband's loss of sight taught me that life without sight is definitely a challenge, but it is still possible to have a good quality of life.  It is still all a gamble.  Regardless of treatment, sometimes it is impossible to prevent a person from going blind, regardless of their life expectancy.

Dr. George Spaeth:  When people start noticing deterioration in their vision, they have to make sure they get that across to the doctor.  It is not rare for a person to be getting worse, but not have that show up in the tests.  But back to the symptoms.  If you are having more trouble with your sight, do not leave the office until it is clear to you why that is happening.

P:  When does glaucoma actually become a disability and not just a nuisance?

Dr. George Spaeth:  Glaucoma is a disability when it has enough effect that it limits what a person wants to do.  Some people need every bit of sight they can get, and they develop problems from glaucoma quickly.

P:  My doctor has told me that I have the eyes of an 80-year old person.  I am only 60-years old.  What does that mean for my future?  I have normal-tension glaucoma.

Dr. George Spaeth:  I think it means that you need to be alert.  If you think you are getting worse, insist that your doctor understands that and takes action.

P:  But, Dr. Spaeth, how can the doctor decide why you're not seeing as well when he doesn't see any changes?

Dr. George Spaeth:  Reasons for seeing worse include cataract, macular degeneration, corneal changes related to surgery or drops, the wrong eyeglasses, worsening glaucoma, or some rare conditions.  The visual problems caused by all of those are different, and the doctor should be able to distinguish between the differences.

P:  How does a patient know the problems caused by loss of vision are due to glaucoma when the patient also has a cataract?  And when none of the causes you mentioned is evident and the eyesight is still deteriorating, what then?

Dr. George Spaeth:  If vision is still getting worse, then you have to search until you find the answer.  Unless you know the cause, you can't give the right treatment.

P:  My doctors say they do not know why my vision is getting worse.  The only thing doctors can actually do is reduce pressure, so that's what they try to do.

Dr. George Spaeth:  Ask again: "Why is my vision getting worse?"  If you get no answer, see another doctor.

P:  Is there any standard for assessing glaucoma disability?  Are the standards different for every country or even among different states?

Dr. George Spaeth:  One of the problems is that until recently there was no standard.  We have developed a standardized test that determines how much effect visual loss from any cause is having on a person's ability to perform the activities of daily living.  The test is called the "assessment of disability related to vision" (ADREV).

P:  Is that test well known?

Dr. George Spaeth:  It is new.  We have published information about it, have talked about it, and had posters at research meeting.  It requires relatively simple equipment (matching pairs of socks, reading signs at a distance, detecting motion, etc.), but it has to be standardized.

P:  Who can assess or administer ADREV?

Dr. George Spaeth:  We are hoping that within a few years every center will have the test and use it.  It consists of 10 sub-tests, such as finding boxes in a room, walking an obstacle course, using a computer, etc.  The idea is to determine for a specific person how the illness is affecting that person, not just some generic average.

P:  Does a person have to be declared legally blind to be declared disabled?  Does being legally blind prevent a person from working?

Dr. George Spaeth:  Legally blind people can often do so much that they are not functionally disabled.  They can often do many kinds of work.  But certain types of visual loss, such as loss of contrast sensitivity, make it hard to work in any task that requires sight.

P:  Why does glaucoma get worse?

Dr. George Spaeth:  Glaucoma gets worse for several reasons:  The IOP is too high for that person; the person doesn't take the prescribed medications; the optic nerve is so badly damaged that it dies by itself.  (The last one is rare and may not actually happen.)  So if a person's glaucoma is getting worse, the IOP is almost always too high for that person.  But as mentioned, there are many other reasons for vision deteriorating in a person with glaucoma, such as cataract or macular degeneration.

Moderator:  What does a glaucoma patient do when one doctor advises surgery and another doctor says the surgery is too risky?

Dr. George Spaeth:  That's a hard question to answer.  Risky for what?  Surgery has immediate risks; not doing surgery has long-term risks.  Which is most important?  If you are already getting worse, you will continue to get worse.  If you are getting worse at a rate that is going to make you go blind before you die, the risks of surgery are comparatively small.  What do you do when you get two different opinions about the best washing machine to buy?  You decide which opinion is most credible.

P:  Even visual loss can alter the quality of a glaucoma patient's life.  With darkness now coming at an earlier hour, driving is even more of a problem.

Dr. George Spaeth:  Trouble in the dark is a classic symptom of glaucoma.  If you are having more trouble in the dark, think that your glaucoma is getting worse.  It may not be the cause, but it certainly could be.

P:  The city where I live has public transportation.  I won't move away because driving in the dark would be too risky for me.

P:  Seven years after having a trabeculectomy, a myopic, diabetic, 50-something female patient's intraocular pressures are 7 mm Hg.  She says she has lost no more vision.  However, she has had no visual field tests since before the surgery.  Her eye doctor says it's pointless for her to take visual field tests.  He says:  "What can we do if the fields are deteriorating?  Your pressure is as low as it can go".  Under such circumstances, would that be considered good medical practice?

Dr. George Spaeth:  I think the doctor is theoretically right, but practically wrong.  The field test is safe and provides useful information that helps planning.  I would advise a field test.  There are, as mentioned earlier, many reasons vision gets worse.  Visual field tests help to determine the cause.  Patients with glaucoma get brain tumors, retinal detachments, and other causes of worsening vision.

Moderator:  Dr. Spaeth, thank you for joining us.  It's always a pleasure to have you here.  You get everyone thinking and challenge our assumptions.

Dr. George Spaeth:  Thanks, all.  Aloha!

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